For most seven year olds, the biggest day to day concerns involve what game to play at recess and will they hit the homerun in the weekend baseball game. But for Kristopher Phillips, his daily focus is on something of a much larger scale. Kristopher is in desperate need of a new liver.
In an interview with Vince Phillips, Kristopher’s dad, we discussed the path that their family has been on and the importance of organ and blood donation. “Kristopher turned jaundice at three months old. The jaundice was noticed by a nurse administering routine vaccinations. The nurse contacted our pediatrician who made arrangements to have Kristopher admitted to the Stollery. After a liver biopsy and blood tests Kristopher was diagnosed with Alpha 1 Anti Trypsin Deficiency. Basically, in healthy people, the liver creates the Alpha 1 enzyme and then releases it into the body where it’s used for the lungs, to keep them soft and healthy. In most cases of this disease the patient will develop lung disease. In other cases, the patient develops liver disease. Such is the case with Kristopher. The enzyme that is being held in the liver has caused liver cirrhosis and all of the health complications that come with liver cirrhosis”.
Since diagnosis, Kristopher’s parents knew that the cure for Kristopher would be a transplant, and the long wait began.
“Until he was 5, Kristopher has lived a normal life with only routine specialist appointments and a few medications and vitamins. On his fifth birthday Kristopher vomited blood and was rushed to the Stollery. We learned then that due to blood flow being restricted through the liver that Kristopher developed varicose veins in his esophagus. One of these veins broke and caused some internal bleeding into his stomach. Kristopher received a much needed blood transfusion and then a procedure to fix the varicose veins, called banding”, explained Vince.
After that, Kristopher would go for regular scopes to check for and prevent varicose banding. “Even with all of that, we never felt like we had a sick child. Kristopher has always been an active, talkative, little boy”, his father described.
As the time passed, recently Kristopher’s health has deteriorated. He has developed more varicose veins that needed to be banded every 3-4 weeks. He’s developed water on his belly, ascites, that’s being treated with diuretics. He’s also developed a kidney disease that in rare cases has appeared in patients with the same disease as Kristopher. The hope with the kidney disease is that it does not progress any further after liver transplant.
“Although we know it could be worse, and others are dealing with much bigger issues, we now feel like we have a sick kid. Kristopher has missed a fair bit of school due to doctor visits and hospital stays. His energy is lower when the ascites gets big. He goes for regular albumin transfusions to help control the ascites. Weekly blood tests. And overall, not physically the same little boy he was just a few months ago”.
So the wait continues for Kristopher to receive a new liver. “The interesting thing about liver is that it can come from a live donor. We do know of a few close family members and friends that are being tested to see if they would be a match as a live donor. Until a live donor is found we’ll wait for a cadaveric donor (which in itself is a struggle to accept that someone has to die for our son to live), but we hope that everyone reading this story, and other similar stories, can appreciate the selflessness of organ donation that saves lives of people who can go on to accomplish great things in life”, says Vince.
Kristopher has received full blood and blood product transfusions many times in his life, and there will be more. “Every time he receives that gift we see immediate results in bodily function, rosy cheeks and lips, energy level, and reduced ascites. Without these strangers giving this amazing gift, asking nothing in return, we don’t know where he’d be”.
Despite Kristopher being in the fight of his life, he does still enjoy the things that any other Grade 2 student would enjoy. “Kristopher’s current obsession is the Food channel. He absolutely loves watching the food network and says that he wants to be a chef. He often critics our cooking, haha, welcome or not. He loves to try new foods. He watches taste test challenges on YouTube frequently. He likes to browse the T&T Supermarket to find new foods that he wants to try, or that he’s seen on the taste test challenge. He loves sushi right now. Unfortunately, after transplant he will not be able to eat raw foods, so we’ve been trying to go for sushi as often as possible. We frequent Modern Sushi & BBQ in Chestermere at least two times a month. He loves ShopKins and Transformers, and Lego. Although, he spends most of his time drawing and colouring”, explains his dad.
A GoFundMe page has been set up to help support the family and you can donate by visiting www.gofundme.com/2k54tq5g
“Kristopher is a little boy that both Rachael and I are proud to call our son. He is loving, sweet, and has an amazing passion for people in general. Anyone he meets, or any room he is in, he somehow manages to get the attention of everyone in the room. More often than not we do not share Kristopher’s health issues to prevent special treatment. We want him to be treated the same as everyone else, with the same opportunities earned as everyone else. Because of that, we’ve struggled to make his story public, or to reach out for any sort of help”, explains a proud Vince.
